The becoming of a Special Needs Mom, My Journey: Parts V and VI May 03 '05    Write an essay on this topic. Tweet Popular Products in Books Rick Bragg - Somebody Told Me: The Newspaper Stories of Rick Bragg From $6 260 Drum Machine Patterns From $8 The Bottom Line The last 2 1/2 years in just a few words: Denial, Fear, Anger, Acceptance and finally Strength. Feelings that pop up all the time and make me question almost everything. Parts I & II, Leading up to the Birth and After the Birth. Parts III & IV, The NICU and Discharge Part 5: The first year My sons first year was filled with hospital visits, overnight stays and oh so many doctor appointments. Anyone who thinks that when you walk out of the NICU you leave it behind is so very wrong. The NICU stays with you forever. No longer are the alarms going off in the hospital room, but instead are going off in your own home. I was responsible for reminding my child to breathe when an alarm would sound and he would start to turn blue. A forceful nudge was all he ever really needed, but I was always prepared for the moment that it a nudge wouldn’t be enough. Upon evaluation by an early intervention team, my son was found to have higher tone in his right side, low trunk tone and very mild low oral muscle tone. He was diagnosed with as having right sided hemi-paresis. Right away he was put into physical and occupational therapy. Physical therapy was horrible. My son has never been comfortable with anything out of his routine, especially when it comes to being around strangers. I was and still am his security blanket. It took him until he was almost 18 months before he felt okay to be alone with his own father, who he saw every day. We went to therapy twice a week, and each week he would scream the moment the therapist would walk in. There were times where we couldn’t get anything done and I was just sent home with a list of exercises for us to do at home. It was trying. I knew that the therapy was physically painful to him, but I still had to put him through it every week. It was our only chance. Not only was therapy rough, but my son cried up to 14 hours each and every day for his first 9-10 months of life. Not just any crying, but screaming. I took him into the ER numerous times only to be told that babies don’t cry like that for no reason, but that all his tests were fine and to take him home. It was emotionally painful to see the nurses stare at us in pity as I walked out the door with my screaming infant in my arms. It was exceptionally hard to watch other children his age to be laughing and cooing and doing so much more physically. I know that every child is different, but it is hard to have dreams for your child only to have them shattered and then realize that there is nothing that you can do. That you are completely and utterly helpless. That the only thing that can be done is just to wait. Wait. Sounds like an easy thing to do, we weren’t just calmly waiting, we were waiting it out on the never ending roller coaster ride when all I really wanted to do was to get off and climb onto something more predictable like the carousal. My son was delayed in fine and gross motor, but it didn’t stop him from meeting some of his milestones anyway. He sat up at 8 months, rolled over at 10, and started cruising furniture at 11 months. Much sooner than anyone thought he would. He even started crawling around his 1st birthday. All of these were milestones that made me breathe a huge sigh of relief and would bring me to tears. I knew that these were things that we were lucky to be seeing and that he was working so hard to accomplish his own goals. Of course, his disability was quite apparent when he was doing some of these things. When he started cruising, he would only cruise in one direction. It took over a month to get him to go the other way. When he first began to crawl, he would commando or Army crawl and pull himself with his elbows while dragging the rest of his body behind him. That lasted for about a month and then after that he would crawl with one leg, dragging the other behind. None of that mattered though because he was doing it! He proved that he could do it. Never could I have been more proud. Part 6: After the turning of 1. His first birthday brought us another evaluation with the therapists. This time we were told that based on his adjusted age of 10 months, he was essentially within the normal range of fine and gross motor. That even though he was in the very lowest range of normal, he no longer qualified on that alone. Our occupational therapist felt she should continue home visits every other week just to monitor though so we could catch any lags. We were thrilled, but we were also given some not so great news. He was severely delayed in speech. In some areas he scored as low as 3-6 months. This was not uncommon for children with his brain injury, so while we lessoned the appointments for physical and occupational therapy, we began speech therapy. Now I am a huge advocate for therapy, especially since without it my son would not have been able to make such wonderful improvement, but it is rough when you see such improvement and begin to hope that the worst is over only to find out that there is yet another obstacle to face. The first year brought with it another obstacle. Rages. He was always a screamer, was since the day he was born, but he slowly got better and if I was holding him or nearby, he would be fine. Rages on the other hand would start when he was asleep. It could happen at night, or during his day time nap. There was no way to predict it, but when it happened, it was difficult for both of us. It always began the same way. I would hear screaming from his room. Not just any screams, but the types of scream that made you jump from wherever you are and make you run frantically to your child. I would always find him on the floor kicking and flailing about. The only thing I could do is pick him up, hold him steady and wait until it was over. When it was over, he would stop, be calm for a few minutes and then act as if nothing had ever happened. 18 months came with it another surprise, this one wonderful. We had a walker. My son was walking. At the moment of his first step, it was as if the clouds opened up and we saw the sun beaming down on us. It was one of the best moments I have ever experienced and as with all of his milestones, I ended up bawling like a baby and calling everyone I knew telling them that he did it, they said he might not, but he did. Part VII, The Turning of two

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